Thursday, May 24, 2007

Amazing Grace

Yesterday we got the type of confirmation that we've been seeking for almost 6 years: Grace has an Auditory Processing Disorder. "Auditory Processing Disorder (APD) occurs when the brain cannot process or understand correctly the sounds the ears hear, even though the ears might be functioning properly. It is rarely recognized, often misdiagnosed, and poorly understood, yet the effects can be devastating." My heart goes out to Grace, because even though I wouldn't call the effects of her disorder "devastating" (not yet, anyway), I know she struggles more than we realize, just to be a typical kid and do normal kid-things. In addition to (or as a result of? still unknown to me at this time) Grace's APD, she also still struggles with Sensory Integration Dysfunction, Developmental Dyspraxia, and signs of ADD. In a nutshell, her neurons and brain pathways are not firing correctly, and she has real difficulties getting her body to do what she wants it to do and to say what she wants it to say. Can you imagine how frustrating and even scary this must be to her? I have no idea what her brain hears and how jumbled sounds are to her, but one mother describes it "like sound through water." Yet Grace has developed fairly sophisticated defense mechanisms and coping strategies to exist in her little world, while managing to find and foster immense joy. I keep having this image of hammering her brain pathways back in line, like putting a train track back together that has been derailed. While I do want to continue to find the best treatments, adaptations, and therapies to help her cope and even overcome this difficulty, I don't want any of it to take away her unique "Graceness" that is so endearing to me and to the world.

I recently got an e-mail from a friend who has a child with a rare skin disorder that has required this four-year old to undergo plastic surgery. To reward the child for all she's been through, the family took a trip to Disney World. Her mother, my friend, wrote that the expense and the ordeal was worth it to see the joy on her daughter's face at Disney. Never having taken my kids to Disney or ever visiting Disney myself, I can only imagine the magic of that place. I know my kids would get immense pleasure from going to Disney. BUT, Grace got the same amount of joy and pleasure from a simple picture that I printed off the Internet about a week ago.

This picture, a picture of a character who plays "Benjy" in "How to Eat Fried Worms,"was enough to elicit as much joy in Grace as a trip to Disney World would. After giving her the picture, she told me over and over, "Mommy, I'm happy." And she was. So was I.

In the face of all of her daily struggles, Grace has a sense of humor that shines. While Johnny's literal mind often only finds humor in what is logically funny, Grace is able to laugh and delight in the non-sense, the absurd, the ridiculous--in other words, the wonderful world of Dr. Seuss. We've recently discovered one of his best, What Was I Scared Of? In it, a little Seuss creature encounters a spooky pair of pants:

Then I was deep within the woods

When, suddenly, I spied them.

I saw a pair of pale green pants

With nobody inside them!

Grace immediately found the humor in this and has re-enacted the story over and over, chasing Johnny with an empy pair of her own pants (with nobody inside them) to his dismay. She gets it. He doesn't.

Don't tell me that there's nothing wrong with Grace developmentally; But don't stop telling me that she's going to be ok. I know she will be. She already is.

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